Authors

Correspondence

Professor Wilmer and his colleagues report a study showing that
honesty, assurance that patients are not suffering and liberal visiting hours
are the most important needs of relatives of patients who are dying in
intensive care.

Introduction

Caring for families is an integral part of intensive care medicine.
In previous studies we assessed the degree of anxiety and the needs of
relatives of patients hospitalised in the Intensive Care Unit (ICU) (Bijttebier
et al. 2001; Delva et al. 2002). These and other studies showed that the state
of anxiety of relatives of patients hospitalised in ICU is extraordinarily
high, mainly because most perceive admission to ICU as a very frightening and
stressful event (Azoulay et al. 2001; Lee & Lau 2003; Leske 1986; Molter
1979; Ward 2001; Zazpe et al. 1997). These studies also revealed that relatives
experienced recognisable and specific needs. The most important needs were for
information, assurance and proximity. Identifying these specific needs led to a
new integrative approach within our team of caregivers emphasizing improvement
and more skilful communication with relatives.

In our Medical Intensive Care Unit (MICU), the annual mortality
rate is approximately 25%. In more than 98% of cases the death of the patient
is predictable, and in almost all cases the death of the patient is preceded by
extensive communication with the relatives. We felt that the needs of relatives
in these very specific, critical, end-of-life care situations deserved further investigation.
We therefore assessed the needs of patients’ relatives, after they had been
told that their loved one was going to die. Additionally we studied characteristics
of the relatives and patients, which may influence the needs of the relatives.

Methods

This study was completed between May 2002 and April 2003 in the
MICU of the University Hospital Gasthuisberg, at the Catholic University of
Leuven. The MICU is one of several intensive care units in our 1700-bed
hospital. The unit has 17 beds and admits approximately 650 patients per year.

Once relatives had been informed by the treating physician that
the situation had become untenable and that the patient was going to die, they
were contacted by the social worker or head nurse of the MICU and informed
about the purpose of the study. Inclusion criteria for the study were that
relatives 1) had been informed of the imminent death of the patient, 2) were
older than 18 years, 3) could read and write in Dutch, and 4) gave informed
consent. If eligible, the needs of the relatives were assessed with the
Critical Care Family Needs Inventory (CCFNI), a self-reporting questionnaire
with 45 items, scoring on a 4-point Likert scale (“not important” to “very
important”) (Bijttebier et al. 2000; Molter 1979). The questionnaire assessed 5
categories of information: needs for information, comfort, support, assurance,
and accessibility/proximity to patients. Additionally, relatives were asked
questions on their possible needs (n=14) and on social and demographic
characteristics. The data were analysed statistically using averages,
correlation coefficients (CC) and variance analysis.

Results

Characteristics
of Patients and Their Relatives

Data were collected prospectively from 101 relatives of 45
patients (average = 2.2 contacts per patient). The mean age of the patients was
65.5 yrs (20 women), and the mean age of the relatives was 49 yrs (range 20-77,
40 women). The highest qualifications attained were high school diplomas for
73% of the respondents and university degrees for 27%. This was the first
admission to an ICU for 18 of the 45 patients and for 4 patients it was the first
admission to a hospital. All patients died within 1 to 360 hours (average 30
hours) following the first contact between the social worker or head nurse and
the relative.

Relatives’ Needs

The individual items (from the original 45) with the ten highest
and the ten lowest scores are summarized in table 1. Scores for the five
categories focused in the CCFNI were derived from the item scores in each
category. The need for information scored highest (3.68), followed by assurance
(3.33), proximity (3.16), and support (2.71). The need for comfort scored
lowest (2.54).

Influence of
Socio-Demographic Variables of Relatives or Patients on Relatives’ Needs

Need for information or for proximity: Need for information or
proximity was independent of variables such as age of the patient, age or
gender of the relative, or the number of the patient’s previous ICU admissions.
Need for assurance: older relatives needed more assurance about the comfort of
the dying patient than younger relatives (CC 0.22, p=0.03). Need for support: the
relatives of younger dying patients needed support more than those of older
patients (CC=-0.21, p=0.04). Need for comfort: relatives of patients who had
been admitted to ICU repeatedly needed comfort more than those of patients who
had been admitted to ICU for the first time (t-test, p=0.02). Similarly, women
relatives needed comfort more than men (t-test, p=0.04).

Summary

This study explores the needs of relatives of patients who are
hospitalised in intensive care after being told that their loved one is going
to die. The data show that the most important needs are honest and
understandable information about the patient and his or her prognosis,
assurance that the patient does not suffer and is being given the best medical
care, to be able to communicate with caregivers about death itself, and to see
their loved one frequently. These needs are comparable to the needs of
relatives of patients who are hospitalised in the ICU, but not necessarily
predicted to die (Delva et al. 2002). The only need which scores as more important
in this study is the need for proximity, that is, for the relative to be able
to see the patient more frequently.

Not unexpectedly, relatives of younger dying patients needed
support more than relatives of older dying patients. On the other hand, older
relatives needed assurance about the comfort of their dying relative more than
younger relatives. Similarly, women experienced the need for comfort more than
men. These observations can be used to differentiate the care for specific groups
of relatives, focussing on their specific needs.

The need for family conferences as a focus to improve communication
about end-of-life care in ICU has been emphasized earlier (Curtis et al. 2001).
Previous research has also shown that adequate communication, good decision
making, respect and compassion are key determinants to family satisfaction with
critical care patients (Clarke et al. 2003; Heyland et al. 2003;

Kirchhoff et al. 2004). Based on the present data, we propose the
following guidelines for good clinical practice to care for relatives in
end-of-life situations:

1. The treating physician should communicate clearly, honestly and
with empathy about the impending death of the patient.

2. The nurse should participate actively in the process of communication,
evaluate the quality of the communicative process and respond to ongoing needs
of the families.

3. Visiting hours should be liberal in end-of-life situations.

4. There should be daily contact between the relatives, social
worker, nurse and physician. The team of caregivers should coordinate
information delivery on the status of the patient, in advance.

5. Continuous attention should be paid to how individual relatives
cope and apparent needs should be addressed and attended to wherever possible.

We believe that this approach will not only alleviate relatives’ acute
anxieties and needs, but may also foster the healing process at the close of
life. Good ICU management includes good protocols for caring for patients’
relatives. Regular training within the team to improve and harmonise
communication skills should be part of the routine organisational program.

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